Do I really have PMR?

@jabrown0407

"My understanding is if more than 20mg of prednisone is needed to cover the pain, then PMR is questionable. In practice I have no idea how this guideline is honored."
----------------------
It isn't because I needed more than 30 mg for a few years after I was diagnosed PMR. My rheumatologist was surprised when my inflammation markers were still high when I was on 30 mg of Prednisone for PMR. She told me to take 35 mg.

It is very common for patients with PMR to experience persistent inflammation and require higher or prolonged steroid dosages when there are overlapping health issues.

My rheumatologist simply said there was a lot of inflammation for a variety of reasons in addition to PMR. The implication was I had many problems and PMR was just one of them. Over time everything combined was called "systemic inflammation" rather than PMR alone. However, PMR was my "primary diagnosis" and that hasn't changed even though I'm off prednisone now. If anything ... Actemra more or less "confirmed" that PMR was my biggest problem but part of a "full range" of rheumatic conditions.

@sususi I had the flu at the end of February and into the beginning of March….when my flu symptoms were gone I started getting shoulder pains ……I had the flu/ triggering PMR! Still in pain ….my doctor reduced my prednisone to soon and have been suffering ever since!

@miluna so sorry you still have this awful pain. My pain has completely gone. I stopped taking prednisone and worked through the pain till it went. I will never take the horrible damaging prednisone ever again, it lowers immunity and triggered diabetes in me even though I am underweight. Hope you feel better soon miluna.

I am always exploring other avenues to see if I can gain a better picture of what's going on with my PMR as I'm off Prednisone but on Leflunomide 20mg/day now and feeling better but not great.

So I recently did a DNA methylation test via EasyDNA and among the results in there it said that I have a genetic predisposition to celiac disease and that I should get tested. Apparently there is such a thing as silent celiac disease which can affect your body in other ways but you don't notice digestive issues so I am going to explore this further with my rheumatologist (https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/). I'm probably way off the mark but just looking at everything.

The Celiac Disease Foundation website (link above) states the following, which was also quite interesting:
"The number of ways celiac disease can affect patients, combined with a lack of training in medical schools and primary care residency programs, contributes to the poor diagnosis rate in the United States. Currently, it is estimated that 80% of the celiac disease population remains undiagnosed."

@sususi Thanks so much….hapoy to hear you are doing well.

@sususi how long did it take for your pain to go away? I went off prednisone and went through the most intensely painful 3 months and had to start Leflunomide unfortunately. I wonder if I gave up too soon?

@rosi75 at least 4 months, first 3 were horrendous pain, probably 6 -7 months till completely pain free. I am a thin person and lost even more weight with the pain which I believe was caused by a covid jab. I decided to eat pure natural foods, which keeps me really well now. I will never have another mRNA vaccine.